ALS Action Canada - We Stand With YOU.
As a rare community, we are stronger together.
For this year’s Rare Disease Day, we would like to introduce you to a rare disease movement that is close to our hearts, ALS Action Canada. Just over a year ago we met this patient-led advocacy movement and it was a remarkable and eye-opening experience. We quickly discovered many commonalities between our two movements and we have stayed in contact to support each other’s journey. Please take a moment to learn about ALS Action Canada and what they have been doing to advocate for Canadian’s living with ALS.
A Message from ALS Action Canada
For 100+ years, many thousands of people diagnosed with Amyotrophic Lateral Sclerosis (ALS) were sent home by their doctors to die a horrific death because there were no meaningful treatments available. Over time people with ALS lose the ability to walk, talk, eat, swallow, and eventually breathe. It has been described, ‘like living in a glass coffin’. Eighty percent (80%) of people with ALS die within two to five years of being diagnosed. Those who live longer than five years usually rely on a ventilator through a tracheotomy and can only communicate with their eyes using eye-gaze technology.
In recent years, the ALS story has changed. It is no longer just about wheelchairs and medically-assisted dying. It now includes unprecedented hope given that there are over 160 drug companies working on ALS projects. There are several promising ALS therapies in the late stages of the clinical trial pipeline including: AMX0035, Orphazyme and Tofersen; and there are new, innovative clinical trial formats that enable patient-centric inclusion criteria and produce results faster. The reality, however, is that all of this activity has been largely happening outside of Canada.
Canadian patients are faced with a crisis of hope. Despite the prospect of scientific breakthroughs, the current Canadian drug approval process is longer than the expected lifespan of an ALS patient. To illustrate, Edaravone (Radicava) was approved for use in the USA in May 2017 and wasn’t approved for use in Canada for another ten months during which time approximately 830 Canadian patients that could have benefitted from this therapy died. After the March 2018 Health Canada approval, patients who could afford to were able to purchase the medication on their own, however, it took another 574 days for the first province, Quebec, to provide public reimbursement. This timeframe represents 1700 patients’ lives. British Columbia didn’t approve Edaravone until August 2020 and to date neither Newfoundland or PEI have approved it. Considering the above, if a scientifically validated cure is made available in the USA tomorrow, and a Canadian is diagnosed with ALS the following week, that Canadian may not survive to access the therapy. They will most certainly have to pay for it and if they cannot afford the therapy, they, in all probability, will die before provincial coverage is made available. Canadians are fighting for the right to live.
As such, ALS patients have formed ALS/SLA Action Canada to establish a patient-led advocacy movement that is committed to ensuring that the new ALS story of unprecedented hope is heard and that urgent action is taken to save the lives of thousands of innocent Canadians. With members from medicine, law, engineering, accounting, business and the military, ALSAC composed a White Paper to holistically assess the ALS crisis in Canada from the patient frame of reference. Numerous stakeholders were consulted throughout its development and it was drafted with input from ALS Canada, neurologists, Health Canada and the non-partisan federal ALS Caucus. The paper helped to shape submissions to the PMPRB, CADTH, a Pre-Budget Submission for the year 2021 and define the four primary objectives of ALSAC:
1. Ensure immediate access to therapies once approved in other countries;
2. Ensure timely provincial health care plan coverage for new ALS therapies;
3. Bring more and better designed clinical trials to Canada for ALS; and
4. Fund ALS research as per the Government of Canada’s own Motion 105.
The Canadian government has mobilized quickly and capably to address the urgent needs of the COVID19 pandemic. Both the financial commitment from the government to many sectors of Canadian society, coupled with the generosity and community-minded spirit of Canadian companies and citizens, has been staggering. After 100+ years and tens of thousands of deaths, it is time for the same commitment, urgency and compassion to be shown to people with ALS. Time is of the essence. ALS is not an incurable disease, it is an ignored and underfunded disease, especially in Canada.
We ask you to help us fight for our lives by following us on our social media platforms, share our tweets and Facebook stories and join our organization as a supporter.
